Injecting Sense

"Have common sense and ... stick to the point."
⎯ W. Somerset Maugham

Wednesday, November 28, 2007

THE LEGACY CONTINUES

Last week was the first anniversary of the death of Dr. Bernie Rimland. Anyone who has questions or doubts about the amazing legacy of this man, or who doesn’t believe in the hope he gave us all, should go here to see a 30-minute video tribute. Thanks to Kim for posting this, and especially to Stan Kurtz for creating this wonderful film. And never-ending thanks to Dr. Rimland ⎯ for everything.

Monday, November 12, 2007

WE BELIEVE

I know I’ve been pretty much stuck on the new Age of Autism site lately, but they keep putting up great stuff. Today saw posting of Why We Believe, by Kent Heckenlively, in which he reviews “the reasons and the research so many parents believe autism and other neurological disorders are caused by a medical system run amuck.”

Mr. Heckenlively doesn’t break any new ground here. He just lays out in a concise, clear, and convincing manner, the proposition that we are not crazy. We have a rational basis for our belief. Let’s face it; only the beat of reasons would justify beating our heads against the bureaucratic wall as we all do on a constant basis. It’s for our children.

Sunday, November 11, 2007

AN IMPORTANT DISSENTING OPINION

We are facing a public health crisis that transcends the autism epidemic. We must see real change if confidence in our national health-care system is to be restored.

In the last post, I wrote about the new Age of Autism site, and noted the pieces by Mark Blaxil and Barbara Loe Fisher discussing their experiences on the recent CDC “Blue Ribbon Panel on Vaccine Safety.” It is no surprise that the official report by the panel did not reflect the views of Mr. Blaxil and Ms. Fisher. What we are now learning is that the report did not even reflect the full range of discussions that occurred.

Age of Autism is providing a platform for the publication of a dissent from the offcial report. In it, Mr. Blaxil and Ms. Fisher present “a case for change in our nation’s public health strategy.” The first part (of eight) of this blueprint for protection of our nation’s children, entitled The Atlanta Manifesto: Safety Last to Children First, is now up on the site.

Saturday, November 10, 2007

A NEW MUST-READ

Dan Olmsted is our Editor. Kim Stagliano is Managing Editor and Mark Blaxill and JB Handley are Editors-At-Large and Anne McElroy Dachel is Media Editor. We know you'll like the new look and the in-depth coverage.

Rescue Post has been closed for comments. All of its content is at Age of Autism.

Thank you.

Kim Stagliano

With that line up, how could I resist checking it out? After doing so, I can report that it is a site well worth adding to your bookmarks.

The tone is set by Dan Olmstead’s Letter from the Editor (the following being a mere excerpt):

Welcome to Age of Autism, the nation’s first daily Web newspaper for the environmental-biomedical community ⎯ those who believe the autism epidemic is a health crisis that requires urgent action; that autism is an environmentally induced illness, that it is treatable, and that children can recover.

For the most part, the major media in the United States aren’t interested in that point of view, they won’t investigate the causes and possible biomedical treatments of autism independently, and they don’t listen to the most important voices ⎯ those of the parents. We will do all those things, and more.. . .The Age of Autism will be wide-open and transparent in its reporting and commentary on causes and treatments; I am beholden to no individual, organization or fixed point of view. My commitment is to in-depth reporting. I am not a social worker or an autism parent, I’m a journalist drawn to what I called, in my last UPI column, “the story of a lifetime.” Based on my own work, I do believe mercury ⎯ including the horrendously neurotoxic ethyl mercury in vaccines ⎯ is clearly implicated in the rise of autism, and that its continued use in flu shots for children and pregnant women is catastrophic. So is the expanding use of thimerosal in vaccines shipped to developing countries where (no surprise) autism rates are soaring. . .

Also part of the initial offering is a lesson in semantics in which Mr. Olmsted rolls his eyes (just as we all have) at the constant use of the word “emotional” to describe the vaccine/environmental issue and those who question the status quo. Another piece I particularly enjoyed was Mark Blaxil’s account of serving on the recent CDC panel. When one reads Mr. Blaxil’s article together with Barbara Loe Fisher’s post, one gets the flavor of the political landscape and just how stacked the deck is that’s being dealt.

This site is off to the best-possible start, and one can only expect more of the same.

Tuesday, November 06, 2007

National Autism Conference

Just a note to all our friends who will be at the NAA meeting in Atlanta this week. The Rankins were planning on being there, but some other things came up, which need our full attention over the next few days. Here's hoping that all the attendees have a productive (and maybe even fun) time. We'll be thinking of y'all.

EPIDEMIC, WHAT EPIDEMIC?

In her latest post for The Huffington Post, Kim Stagliano tells us of the Boys in the Bus. She takes on the epidemic naysayers in her humorous-but-sensible way. As always from Ms. Stagliano, it's a great read. Check it out.

Sunday, November 04, 2007

A QUESTION OF BALANCE

There was a time when I was engaged in what I thought was a meaningful on-line dialog with proponents of the “neurodiversity” movement. Although I still have friends on "the other side," the dialog didn’t seem to be going anywhere because we could not agree on the most basic concepts: the nature of ASDs and the morality of the process of cure. Still, there was ⎯ and is ⎯ enough common ground that I will often check in on their on-line world to see if there is anything to be learned.

One thing I have learned is that it is rare to find anything written about those basic and irreconcilable issues that can be called balanced. I was pleased to see an exception in the Globe and Mail from Canada. In a recent article entitled ‘Autistics’: We don’t want a cure, Erin Anderssen does a fine job of reporting on (if you’ll pardon the expression) the spectrum of opinions.

She writes of parents like Andrea-Bradford Lambert, who “want their children to be seen as different, rather than disabled,” and who “have been joined by an increasingly vocal group of adult autistics (as they prefer to be called) who say they do not want to be cured.” As Ms. Anderssen explains, those advocates believe that “autism should be seen as part of the ‘neurodiversity’ needed to evolve smarter human beings, just as biodiversity helps life flourish on Earth.”

On the other hand, there is another parent, Harold Doherty, whose son, Conor, has what is described as severe, low-functioning autism.

. . . He communicates verbally through sporadic shrieks and requires constant care; at school, he receives behavioural therapy in a separate room.

One afternoon, while his father was momentarily distracted on the phone, he wandered out the door and across a busy intersection. “He doesn’t understand the risks of cars,” says Mr. Doherty, who worries that some day his son might be abused and unable to tell anyone. Conor often bites his mother and has pulled his father’s arm away from the steering wheel while driving.

“But they don't like us to talk about that,” Mr. Doherty says. He believes that people who make the case for neurodiversity often trivialize autism and deny the difficulties faced by families with disabled children. People with Asperger’s don’t have any business telling him what kind of treatment his son needs, he says.

“Some of them are gifted. Great. But my son isn’t. And many autistics aren’t,” he says. “If I could cure my son with a wave of my hand, I would do it in a heartbeat.”

Then there’s Tanya Stephenson, a mother who tries to balance the concerns of eliminating what is disabling while preserving whatever it is that makes her son unique. The interventions she uses are primarily behavioral therapies.

Each time they undo a behaviour that identifies Tyler as autistic, they wrestle with the choice. When he scores in a video game, for example, they have taught him to squeeze his hands together instead of flapping his arms wildly.

“And we debate this,” Ms. Stephenson says, “because if you’re at a football game, you see some pretty wacky stuff happening when people are so excited because someone scores a touchdown. They look more odd than my son does. So why don’t we try to squash that behaviour?”

In the end, while Ms. Stephenson knows that some autistics and families would criticize her for it, she wants Tyler to have a relationship with his parents, to enjoy the magic of his world while still participating in theirs.

“I am not trying to change that really unique part of him,” she says. “I am saying this is who he is, this is the way he is and if you understand him, you will find he can bring a pretty neat perspective.”

But how does that perspective get communicated, she asks, if he doesn’t have the social skills to share it?

Ms. Anderssen’s article, although more balanced than most, does lean more to the neurodiversity side with its emphasis on “acceptance.” I’ve always thought that the hang up over that word creates a divide that may not be as wide as it appears. Most “curebies” (a category I place myself in) I know truly accept their children. The only thing they do not accept is the inevitability of the disability that comes with the autism package.

Although Ms. Anderssen’s article seems to lean to the neurodiversity side, much of what one hears from the ND camp is, not surprisingly, critical. In particular, Michelle Dawson, the ex-postal worker turned research assistant and commentator ⎯ who is discussed and quoted at length in the piece in a relatively flattering manner ⎯ has expressed her displeasure. I have read Ms. Dawson’s critique, and her chief complaint seems to be that the Globe and Mail article does not mirror her own unique view of autism.

Well, Ms. Dawson, it’s not exactly the piece I would have written either. It doesn’t reflect what I believe about autism. What it expresses, however, is that there just may be more than one way of looking at an issue that is too complex for any simple responses. Considering what we usually see in the press, I can live with that.

Saturday, November 03, 2007

ADVOCACY FROM THE HEARTLAND

The Sioux City Journal came out with an article with a title that caught my eye: Mom takes autism crusade to the presidential candidates. I was delighted to see it told the story of Iowa’s Lin Wessels (a/k/a “MOMA” or “Mom on a Mission”) and Barb Romkema, two of the many people across the country who make A-CHAMP the incredible organization it is. Together, they are taking the battle for safer vaccines and more research into the causes and treatment of autism to the legislature and to the various presidential candidates who are now visiting Iowa.

As a side note, Ms. Wessels states that of the six presidential candidates she has questioned or spoken to, John McCain (who she’s seen three times) has been the most receptive to exploring the issues. That is not intended as an endorsement of any kind; my mind is far from made up about the current crop of presidential hopefuls.)

The impression I get from the article is that these mothers are like all of us in this crazy situation ⎯ too busy to take care of everything that needs taking care of. Why would they devote themselves to this cause?

“It is kind of therapeutical for me, to try to affect change,” Lin Wessels said.

The cause “became much, much larger than Sam [Ms. Wessels’ son]” about two years ago as people wrote “heart-wrenching stories” about their autistic children, she said.

“I’m their voice, too,” Wessels said.

I am profoundly grateful that parents like these are willing to be the voice for my family.

About Me

Civil comments are always welcome.
These posts are my opinions, and should be deemed as nothing but my opinions. Nothing herein should be used or relied upon as advice of a medical, legal, or technical matter.